Newbies unintuitive advice from sleep lab

[Napnea]

If this belongs in another area, please move and let me know.

Age 73, 250 lbs, 6' , normal cholesterol, wonderful labs, no blood pressure problems.

Okay, I'm diagnosed with sleep apnea and am doing the stage II evaluation machine.
First night was with nose mask and really bad results.
Yesterday got full face mask and much better as I didn't have the mouth leakage.
BUT
As I tried the FFM last night, the pressure kept building and I kept tightening the straps to no avail.
SEVERE and LOUD leakage even with straps painfully tightened.

So called sleep lab this morning.


I was told to NOT tighten the straps but to recycle the machine to restart it at lower level.
I asked if...since this thing is not letting me get any appreciable sleep.... could I keep messing with it until I go mad and then just take the thing off and finish the night w/o it and at least get ....some.... sleep.

NO, I was told. Keep the damn thing on and keep resetting machine all night.

This doesn't seem sensible. From my experience I know the entire night tonight will be resetting machine to get that loud leakage to stop. It starts by puffing my cheeks and then a slight hiss and then progresses to full-out loud farting sound that NOBODY could sleep through.

Is there a reason to get NO sleep just to assuage the machine?

(separate issue, but does anyone get hard and sorta painful heartbeats when using this contraption?)


Thanks for any advice or info.

[Napnea]

I should probably mention that I am sure losing weight would help but over the past 8 years or so I have lost over 100 lbs and have "plateau'ed" I guess. Other than starving, I don't know how much more I could lose.
My current weight loss has taken me OUT of diabetes though.

Just a note to say I know the weight is an issue but maybe not one I can manage.

[49er]

Hi Napea,

If you could please fill out your equipment profile using the link in my signature, that would be greatly appreciated. Makes it easier to tailor answers to your situation.

Unless I am missing something, the advice you received makes absolutely no sense whatsoever. But if you tell us the type of machine you have, we can give you the secret handshake to temporarily change the pressure to your highest number so you can adjust the mask at that level before changing it back to the prescribed pressure.

With autopaps, many people have problems with leaks because they adjust the mask at the lowest number in the range without accounting for the fact that the pressure will climb. Anyway, hopefully, once you do that, it will solve the problem.

Regarding having painful heartbeats, can you elaborate? The reason I am asking is I have been diagnosed with tachycardia so I want to make sure you don't possibly have that issues. Of course, if you have any doubt, you should see a doctor.

49er

If this belongs in another area, please move and let me know.

Age 73, 250 lbs, 6' , normal cholesterol, wonderful labs, no blood pressure problems.

Okay, I'm diagnosed with sleep apnea and am doing the stage II evaluation machine.
First night was with nose mask and really bad results.
Yesterday got full face mask and much better as I didn't have the mouth leakage.
BUT
As I tried the FFM last night, the pressure kept building and I kept tightening the straps to no avail.
SEVERE and LOUD leakage even with straps painfully tightened.

So called sleep lab this morning.


I was told to NOT tighten the straps but to recycle the machine to restart it at lower level.
I asked if...since this thing is not letting me get any appreciable sleep.... could I keep messing with it until I go mad and then just take the thing off and finish the night w/o it and at least get ....some.... sleep.

NO, I was told. Keep the damn thing on and keep resetting machine all night.

This doesn't seem sensible. From my experience I know the entire night tonight will be resetting machine to get that loud leakage to stop. It starts by puffing my cheeks and then a slight hiss and then progresses to full-out loud farting sound that NOBODY could sleep through.

Is there a reason to get NO sleep just to assuage the machine?

(separate issue, but does anyone get hard and sorta painful heartbeats when using this contraption?)


Thanks for any advice or info.

[Jay Aitchsee]

Napnea, welcome!
You are experiencing one of the most difficult aspects of the therapy - adapting to the interface (mask). It is counterintuitive, but correct that over tightening will cause more leaks. Most full face masks are designed to "float" on the face with minimal tightness of the headgear. Donned looser rather than tighter, the full face mask will expand from the air pressure and seal to the face. Unfortunately, it takes a bit of patience to learn to adjust the mask "just right". By restarting the machine (it is probably set for a ramp period where the pressure starts low and builds to the prescribe pressure) the RT is hoping that at the lower starting pressure and subsequent lower leaks, you will be able to fall asleep before the leaks become apparent.
If your machine has a mask test feature, during the day, try donning your mask just snuggly, turn on the mask test and see if it leaks, you should feel it tighten as the air is turned on. If it leaks try making small adjustments until you are satisfied. Another thing to try is with mask fit feature or the air on, hold the mask to your face with just a couple of fingers around its center (no headgear) and make small adjustments of pressure with your fingers to avoid leakage. Then try to replicate that position with the headgear. Of course, you must do this practice during the day, not when you are trying to sleep. If you can find a suitable adjustment of the headgear during the day, you'll have a better chance of getting some sleep at night.

[archangle]

Welcome to the board. Sorry you needed to join us. Unfortunately, the sleep labs are often not very helpful. Sometimes you DO have to just tough it out.

Please fill in the equipment on your profile. It will help us help you. There's some info on how to do this in the links in my signature line.

The most important thing to know is what CPAP machine you have. Take the water tank out before messing with the machine to prevent water damage.

If you don't know the machine type, what does it say on top of the machine? Especially something like AutoSet, REMstar, etc. If it says "REMstar," tell us the whole line containing "REMstar".

Sometimes, tightening the straps on a FFM makes leaking worse.

Is this a short term "in home measurement" trial, or is this supposed to be your final machine?

[Nick Danger]

I suspect that the "hard and sort of painful heartbeats" result from feeling anxious about using the machine, but of course that should be checked with your doctor. Do you find it hard to breathe while using the machine? Are you more aware of your breathing and heartbeat when using xPAP than when not using xPAP? Do you feel closed in or claustrophobic while using the machine? Do you feel frustrated and angry while using it (I sense a lot of frustration in your original post)?

All of the above feelings are normal for new users. Some of us have them all, some of us have some of them, some of us have none of them.

A well-adjusted mask should not make farting sounds, so something isn't working right for you. As some have mentioned above - the problem is just as likely to be due to over-tightening as it is to be due to under-tightening. So, yeah, some of the advice is counter-intuitive. In terms of giving up for the night and sleeping without the machine after trying it for a while - that is a very difficult habit to break once you start it.

I wish you well. This isn't an easy therapy to get used to. I hope it works for you.

[Napnea]

I suspect that the "hard and sort of painful heartbeats" result from feeling anxious about using the machine, but of course that should be checked with your doctor. Do you find it hard to breathe while using the machine? Are you more aware of your breathing and heartbeat when using xPAP than when not using xPAP? Do you feel closed in or claustrophobic while using the machine? Do you feel frustrated and angry while using it (I sense a lot of frustration in your original post)?

Yep. Bingo. I tried an extra half a xanax prior to lying down. (another issue as I can't figure out whether to do the bed or the recliner because the recliner is where I ....usually..... drowse off.)

I can't really fill out the equipment thing as what I am doing now is the "test" machine (I think for evaluation) Then you order the permananent equipment.

Hopefully I'll understand your questions re: varying data after I get this first week of having ANYTHING on my face while trying to sleep .

Right now I'm trying TO sleep. Took me an hour and a half to drift off even though bone tired.

Then the "machine" started climbing the pressure.

My confusion stems from their saying I am ...better off.... to spend a whole night resetting pressure back to low rather than getting a few hours of uncomfortable/unusual sleep and then just taking the whole thing off to get..... some... sleep before morning.

Hopefully I will either get used to this thing or die trying.

[bwexler]

It is really critical to tell us what your temp machine is.
If you will, we can advise you on what you can do to allow the machine to stop farting and let you sleep.

[library lady]

Some people find that mask liners help with leaks; I struggled with leaks until I learned that there was such a thing, and for me they were a game changer. Not everyone needs them, not everyone likes them, but for others they really help, especially with full face masks which have a larger footprint on the face.

You can google "cpap mask liners", which is what I did. The two main ones are Pad-A-Cheeks and RemZzzzs. I tried both of them and I like RemZzzzs better so that is what I use.

I had a lot of trouble learning to adjust my mask the first few weeks, and it is a struggle to master using cpap, but eventually you will get the hang of it and reap the benefits. Come back whenever you have questions or difficulties, there are a lot of good people here who can help you, especially if you go into your profile and enter your equipment. People who use the same equipment will be the best ones to help you...

[Nick Danger]

If the recliner is comfortable for a full night's sleep and that's where you usually sleep, by all means start with that. After you have gotten used to the machine while sleeping in the recliner, then switch to the bed. You may be sleeping in the recliner because you get better sleep there - obstructive apnea is usually less severe when in a sitting or partially sitting position.

Another possibility that some find helps them get used to the machine is to wear the mask and run the machine while watching TV (if you're like many of us before we were successfully treated - you frequently fall asleep while watching television anyway!). That relieves the stress over worrying about the fact that you aren't falling asleep.

Nick

[Napnea]

Wow, good stuff here.

My temp machine is a Resmed, but I don't see a model number if that's important.

[archangle]

Wow, good stuff here.

My temp machine is a Resmed, but I don't see a model number if that's important.

Tell us what it says on the top of the machine. Especially tell us what it says next to the power button. Probably AutoSet, or VPAP something.

[Janknitz]

Are you with Kaiser by any chance? They do home titrations, which is what's going on with your loaner machine. The auto adjusting machine is set wide open, that is the low pressure is 4 and the top pressure is 20. Theoretically, the machine should adjust to your needs to help determine the correct pressure or range of pressures.

Good in theory, not so easy in the execution, because:
4 feels to low, may make you feel like you are suffocating. This increases your sense of anxiety and claustrophobia in the mask.

20 is a long way from 4. The machine will try to stay at 4 until you have an apnic event, in which case the pressure has to climb to "catch the apnea. Because it doesn't go up quickly, it may be "chasing" the apneas--you may have more before it finally gets to high enough pressure to stop the apneas. So the pressure reached may be higher than what would be necessary if your machine was dialed in for a narrower range.

AND, the mask which is adjusted when you first turn on the machine at 4 cm/H2O is now going to blow out at 15 or 20.

Unfortunately, during a home titration there's not much you can do. We can tell you how to change and adjust the pressures, but the sleep clinic will be VERY unhappy, since that will interfere with their titration (AFTER you get your own machine we can definitely help you with this).

If your machine has a mask fit feature, try to fit it on the higher pressure.
When the mask is blasting, hit the ramp button--it's better than turning off and on again (though they work pretty much the same way, but quicker to hit the ramp button which will drop the pressure back to 4 for a while).

I have fitting tips in my signature below which may help you understand how best to fit the mask.

Hang in there, your titration will probably be a week long. After that you can get your own machine and we can help you get it set up for optimal function and to minimize the leaks.

[Napnea]

Yes on Kaiser.

The on/off button takes it immediately back to 4 which ....I THINK.... might make getting back to sleep easier.
I spent last night adjusting straps like a saddle.
Painful, time consuming and still leaking.

Took a nap today using the "push the button twice" method and got what felt to be some good rest.

Tonite will start in recliner since it is so easy to hit that button. Once for OFF immediately again to start at 4.
The 4 doesn't feel claustrophobic with the full face mask.
With the nose one it did. The face one has more reserve air hanging around.

hope hope hope

[chunkyfrog]

--"like a saddle".
Actually that is a lot easier--I learned to as a kid.
Good and snug is best, but a mask needs to ride on air, like a hovercraft.
This is more like flying a helicopter. Just be patient.
Remember, little kids have done it.